I actually find this a weird saying since having the boys.. it’s not something I find myself saying to anyone now – Because my children weren’t born healthy.

In fact when people ask us about having more children it becomes quite awkward at times, reactions are one end of the scale to the other either lovely or people actually look at you like your almost mad, usually right after the same questions each time and the same answers..

“Yes, my child has a rare disease. Yes It is genetic. No, we didn’t know we were carriers…. It is not contagious.

One thing I have learned since I was pregnant, is when it comes to being a mum, health really doesn’t matter all that much. I mean of course its important but I love my children fiercely, no more or less than I would love them without a medical condition – their Health, is just part of their individuality.

My sons are perfect – just as they are.

But please don’t confuse this for me being ok with it all the time . I am very, very sad sometimes — sad my children have had to endure physical pain, countless appointments ,hours of procedures and weeks at a time in the hospital and one of them a uncertain future. Do I wish they didn’t have to go through all of that? Of course I do.

But from the first moment I saw both of my children I knew there was nothing to be gained, and so much to be lost by wishing they were different.

In spite of, or perhaps because of, medical issues, my children are in fact amazing,not once do they complain. They would put some adults to shame with their “get on with it” attitude. Because it’s not what life throws at you but what you throw back at it that matters – I will never be able to explain just how much they add to my life and the lives of those who are lucky enough to be around them. They can be cheeky, (very) naughty at times and demanding, yet so innocent and funny especially when they are together.

They are human beings, not a diagnosis. They bring out in me a parent I didn’t know I could be. They make me a better person – not because of genetic conditions but because of exactly who they are and everything they add to our family.

And so of course it’s normal to wish for a healthy baby but please don’t show me pity or judge our decisions because I am not embarrassed by my children’s medical conditions. In fact I am proud because without those we wouldn’t have the perspective we now do on things.

since i have become a parent it’s taught me sometimes things do turn out differently than we expect. And if that happens, know that there is so much happiness that can be found there, too.